A protocol for emergency care for every myasthenic is a great idea, but remember, as we are all unique and react differently, so will our crisis parameters be different. The best I can offer is a 'shell' and you will need to think about your own specific details and how they relate to these tips.

1. At the next appointment with your neurologist, tell her/him that you want to understand what mechanism is in place should you "go into crisis". Do not accept any unequivocal responses (like, "Oh, don't worry about that") but come up with a plan TOGETHER. It won't help you if you've made a plan that excludes your neurologist's input--- he/she is the best reference point you have.

2. Along with your neurologist or his/her nurse, write up a brief explanation of your illness and all of your meds (and med dosages). Include your insurance info, next-of-kin info, neurologist's phone numbers, and address and phone of the hospital you will use. This is also a good time to tell your neurologist who your advocate is (your spouse, trusted friend, adult child). Make several copies of this, and update it whenever there is a change in anything important. Keep a copy of this history in your medical information folder (you do have one, don't you?); in the glove compartment of your family car; in your purse/briefcase/elsewhere on your body; and in a prominent place within your home.

3. Locate the EMT/Fire Squad closest to your home and go there. Ask to speak with the Captain and tell him/her where you live and that IF you should ever need an ambulance, they can have your history on file. If that's refused (not unusual, since they don't want to be responsible for out-of-date, inaccurate medical info) ask him where you should keep this info in your house for the EMT squad to find.

Now we'll move on to WHAT HAPPENS AT HOME SO YOU 'KNOW' WHEN YOU NEED HELP.

In general, it is a good idea to get in the habit of keeping a medication "diary". This is really just a list of what medications you've taken each day, in what strength, and at what times. This is invaluable to any care-taker should you not be able to speak for yourself.

1. Identify the problem: When did you start feeling poorly, exactly? In what way did it manifest (do you have a fever; an open sore not healing; nausea or vomiting?). Have you been exposed to anyone with a cold or other contagious illness? Did you remember to take ALL of your meds today? What time was your last MG medication, and did it help? Did it make your symptoms worse? Are you having problems breathing? What is the highest number you can count up to, and has this changed over the course of an hour? Did it get better or worse with medication? Does it get better if you slow yourself down and make yourself relax so that you won't hyperventilate?

WRITE ALL OF THIS DOWN ON A PIECE OF PAPER.

Believe it or not, not being able to swallow your meds, or enough liquid to stay hydrated, is a SERIOUS situation for an MGer and you should go to an ER, no questions asked.

2. Either you or your advocate call your neurologist, as per the plan you drew up with him/her. Relate the above answers. Follow his/her directions.

***** If you feel you must go to the ER, have someone call ahead to the ER, ask for the Triage Nurse, or "doctor in charge" (it won't be your neurologist) and state that a person with MG will be arriving shortly and cannot (fill in the blank here) swallow, breathe, move, whatever. TAKE THE PIECE OF PAPER WITH YOU ON WHICH YOU OUTLINED YOUR PROBLEM AND WHAT YOU'VE TRIED TO DO ABOUT IT. Believe me when I tell you that you won't be in any shape to answer their 9 million questions and they MUST know your history to treat you appropriately. Take with you ALL of your MG meds and whatever you need to swallow them (icing, yogurt, pudding) because you won't want to wait for the hospital pharmacy to order it--- that can take several hours! (However, do not take any meds until you are seen by the doctor once you have reached the ER in case it's the medication level itself that turns out to be the problem.) If the ER triage nurse (the one who briefly sees you and determines the level of seriousness of your problem) does not understand MG or MG problems, you will have to make sure the person who accompanies you to the ER makes sure the nurse READS your piece of paper!!! Likewise, your accompanying advocate will need to watch the clock, and YOU, to make sure you're not getting worse while you wait to be seen by the ER staff.

Finally, if you can possibly remember to do this -- DO NOT PANIC (and try to make sure your appointed advocate is not panic-prone). Panic will only make your symptoms worse and cloud the underlying MG issue needing attention. Likewise, it will make you seem like you are over-reacting to your "invisible" problem and even medically trained personnel might miss the reason you have presented yourself to the ER.